Interpreting chronic disorders of consciousness: medical science and family experience

Abstract

Rationale, aims and objectivesChronic disorders of consciousness (CDoC) pose significant problems of understanding for both medical professionals and the relatives and friends of the patient. This paper explores the tensions between the different interpretative resources that are drawn upon by lay people and professionals in their response to CDoC.MethodsA philosophical analysis of data from 51 interviews with people who have relatives who are (or have been) in a vegetative or minimally conscious state.ResultsThe medical specialist and the lay person tend to draw on two different interpretative frameworks: a medical science framework, which tends to construct the patient in terms of measurable physical parameters, and an interpretative framework that encompasses the uniqueness of the patient and the relative's relationship to them as a social being.ConclusionsThese differences potentially lead to ruptures in communication between medical professionals and relatives such that that an increased self-consciousness of the framing assumptions being made will facilitate communication and enrich understanding of CDoCs.

The psychological impact of prolonged disorders of consciousness on caregivers: a systematic review of quantitative studies

“…Family decision making has been shown to rely on their unique knowledge of the persons pre-injury self (15), their own beliefs that continuation of treatment is necessary even when this not seen by the professionals as being beneficial to the person (16) or misinterpretations of the aims of interventions (12).…”

Novel insights into patients' life-worlds: the value of qualitative research

“…Good clinical practice, and indeed policy, depends on the sorts of knowledge generated through small, in-depth qualitative studies, as well as information generated through large-scale clinical trials. For example, patients and doctors can have quite different understandings of medical conditions, and these differences can lead to "ruptures in communication" 4 and thus impoverished medical care, patient and family dissatisfaction, and even distress. Livingston and colleagues' study 1 is a compelling example of how a small-scale qualitative study can produce insights that can inform diagnostic criteria, clinical assessment, and patient care.…”

“…Direct encounters with hurricane wind and water hazards, coupled with resource losses and enduring adversities-including delayed building repairs, school closures, and financial hardships-increase risks for newonset post-traumatic stress disorder and major depression in people without previous psychi atric history. 4 Worse hazards generate more stress, psychological distress, and psychiatric disorders.…”

Diseases, patients and the epistemology of practice: mapping the borders of health, medicine and care

“…Drawing on extensive empirical data, Andrew Edgar, Celia Kitzinger and Jenny Kitzinger describe and analyse the categories employed by medical professionals and lay carers (typically family members) when conceptualizing the subjective states of patients suffering with Chronic Disorders of Consciousness (CDoC) [14]. They note that these different parties employ quite different interpretive frameworks to address the most pressing epistemological problem such patients present: how to ‘gain an insight into the patient's state of consciousness merely from observation of their physical movements – the flicker of an eyelid, thrashing or kicking’.…”